Endometrioma cyst

[Tumbleflumps]

Hi I'm new here, so here's a bit about me...

Been TTC for 4 years with one MMC 3 years ago. My husband and I recently attended an appointment to be referred for IVF but we had to redo our tests again before referral. I went to have a pelvic ultrasound today and the nurse said I had a 4cm endometrioma cyst behind my womb. She asked if endometriosis had ever been mentioned to me before, which it hadnt until today. She ended up doing a TV scan to get a better idea of the situation.

I've tried looking up endometrioma cysts, but they mainly refer to ones on the ovary. I'm obviously a bit concerned about this, as it's never been mentioned to me before and I'm worried that this will delay or affect IVF treatment, not to mention the possibility of having endometriosis. My local trust is currently going through public consultation as to whether to reduce or cut IVF funding completely, so I'm in a complete panic that worst case scenario, they cut the funding right before we get a chance to have treatment.

Has anyone had any experience of these sorts of things?

Thanks in advance

[Hidden]

I have two 7 cm endometriomas, one on each ovary. I haven't heard that they could be anywhere else?! I am sure someone else will jump in, but endometriomas on ovaries do usually indicate disease elsewhere. If I were you I would ask to see an endo specialist. You can find your nearest centre at bsge.org.uk and your GP can refer you. The specialists use a technique called excision to remove the endo. I was referred to a general gynae at my local hospital and his solution was to 'simply' remove my ovaries!

[Tumbleflumps in reply to Hidden]

I'm going to try and get hold of my consultant next week to see if he can give me any further information. After googling the crap out of it this afternoon, the only thing I can work out is that if a cyst ruptures, some of the fluid spills into part of the pelvis, which could explain why it's not on my ovaries. I had a hemorrhagic cyst last year when I had my last ultrasound but as there was no follow up, I assumed all was okay. When i mentioned this to the sonographer, she looked back through my notes and said it was most likely a corpus luteum cyst.

Reading the symptoms of endo, very few of it seems to apply to me right now or I've always had it. For example, since coming off the pill 4 years ago, I always spot for about 4 days before my period starts but the doctor said it was nothing to worry about. I'm always fairly tired, but I get up for work at 530am each day and have a hours commute to work. My periods have gotten heavier since I miscarried, but that was three years ago. The only thing I have noticed the past 4-5 months is that my cycle varies between 24 - 27 days, whereas before they were 27-28 days. Not much of a variation but not sure if that is the start of anything?

So confused right now!

[Hidden in reply to Tumbleflumps]

I read that it does matter whether your cycle is 24 days or 34, but it should be regular. It shouldn't vary. Mine varies from 27 to 30 days.

But you're right, it is all so confusing. I read things on here then read something contradictory on another site. I suppose research is happening all the time.

I keep saying it to people, but I cannot recommend the Facebook group endometropolis enough. I have learned so much from there. It's manned by highly educated people and some of Americas top endo surgeons reply to posts on there. All we can do is be strong, arm ourselves with lots of information and seek out the very best help that we can find.

[Hidden]

Not quite sure why you felt the need to comment there?

I have learned so much from that site, as I have from this one. Both have armed me with the information and guts to turn my back on my general gynae and seek the expertise of an endo consultant.

But what I do like about that site, is the ability to discuss consultants and that is how I found mine. The admins are incredibly helpful and quick to help.

[Rockflower]

I agree with Marie, endometropolis is a really good Facebook group... It helped me to understand so much more about the very limited (and often ludicrous ) 'information' my consultants and gynaes gave me after my diagnosis. Also good that you can discuss consultants and clinics there as I find it really helpful to talk to others and their experiences with these. There are some very knowledgable people on there, sufferers and medical professionals.

I have also found a lot of information on here and some very helpful and supportive people too. I certainly would be lost without the Internet!

I did go through IVF with a 4-5cm endometrioma on my right ovary. It was only discovered half way through treatment, by the nurse scanning me who was experienced in recognising different cysts. This led to my endometriosis diagnosis.

It did prove a problem after egg collection as all the follicles refilled with fluid (this is normal) and along with the cyst my right ovary ballooned. It was very painful and I also got mild ohss. Other than that things went ok.

I've just had 5 endometriomas excised and am planning on my next cycle. I'm just praying no more endometriomas pop in in the meantime!

Speak to your consultant, but I would definitely by thinking about a refferal to a specialist at a bsge center. Good luck xx

[Rockflower]

PS. My cysts was 'borderline' in size for our IVF cycle to continue.... So they may have a size limit on cysts before commencing treatment. I had mine 'drained' after IVF. Big mistake as it refilled within months and ended up growing to 10-12cm. luckily I learnt about the benefits of excision! Sadly though, I still have had more grow again since (either unlucky or not the best surgeon.... I'm not at a bsge center, but I am at an endo clinic)

[Tumbleflumps]

Thank you for your replies.

I got a letter from the hospital a few days after my scan which said my uterus and ovaries are normal but I have a cyst behind my uterus and wants to discuss this in clinic. He said its nothing of concern but questions whether it is affecting my fertility.

So my question is this... I'm 98% certain that this has appeared in the past year, as my last ultrasound showed everything was normal. So if that is the case, I dont think its an underlying issue to us not conceiving as we have struggled for 4 years prior to this?